16 replies to this topic

[sadwife1]

Hi to all,
I have been reading posts from everyone. I am new to this site. I am writing to try and relieve some of my own frustrations. We are not so new to this injury. My husband was injured March of 08. I was once very strong and feeling like we could beat this SCI and he would walk again, but April of this year ended all of those hopes when he had to have his left leg amputated due to a blood clot. He had quit eating and his body was giving up. To add to our misery he developed yet another bed sore, this time it was his entire behind. He has a gapping hole that doesn't want to heal. This added with the 5 other bed sores that don't want to heal either. We've upped his protein, inserted a feeding tube and give him iron and protein supplements every day. My once strapping strong invencible husband is but a shell of what he was and he doesn't seem to understand or is able to focus on anything any more. I find myself crying all the time, I don't even know why anymore. He sits and calls my name nonstop, when I ask him what he wants he just stares blankly in space and continues to call my name. He's had CAT scans and MRI's but no evidence of any brain injury or blood clots. I don't know what to do any more. We've had 3 nursing agencies quit on us telling me he needs to be in a "skilled nursing facility because of his bed sores." I refuse to send him to be ignored and miss treated. I keep trying to tell myself that things will get better, but month after month of no good results leaves me feeling empty and out of hope.

[buff]

my boyfriend is in a skill facility due to a bed sore. they treat him great. his sore is healing nicely and he really loves everybody there that takes care of him. it might be nice to have the break. we arranged with the administration that i am allowed to stay the night with him. i don't like not being with him at night so i stay over once or twice a week. you may really find it helpful. you are prob crying because you are stressed a skilled facility may be just what you need right now to. you can check them out you know. keep an open mind about them you may find he has more care than he knows what to do with there and you can sit and enjoy him.

[nomis]

Hi sadwife1

Yeah, things sound tough.
This might have happened in 2008 but that still makes you and your husband new to this injury. It might seem like a long time but these first two years are the hardest, particularly the first year. Obviously things are not good for your husband and I understand the strain that must be causing you. With all that has happened I assume your husband is feeling really down in a state of depression. To come right he's going to need an appropriately positive envionment. So the first step is going to be in addressing your own needs. You have to make sure you are looked after and getting the basics of life so you can be strong enough to offer hope to your husband.
Take care of yourself (and be generous) and hopefully the rest will follow.

[tmac]

sadwife1, I'm so sorry to hear of your hardships and misfortunes. Your post has wrenched my heart, and has made me so badly want to have the perfect solution for you. Actually, I have not much at all to offer as my husband's level of injury (c6-c7 incomplete) has left him the ability to "feel" and bed sores haven't been one of our main issues, but you may want to consider a nursing facility for a little while if the bed sores are that extreme?...Maybe some very aggressive treatments from professionals?...giving the both of you some relief...maybe work toward getting one of those beds in your home that keeps him moving regularly?...Again, just proving my ignorance, but throwing out some ideas.

I can imagine that your husband's state of mind has been greatly altered by his current condition, thus affecting yours as well. The tears you are crying are not unjustified...you are sad to see your husband in such discomfort...you are worried about his well being...you are stressed in trying to figure out how to make things better for him...and you are exhausted in your efforts to be supportive...all the while, probably neglecting your own needs. I can imagine that this is why you cry, and again, you are certainly justified in doing so...you should feel no shame at all about it.

The obstacles that lie in front of us as caretakers for our loved ones are in a seemingly never-ending supply. It's definitely something we must ultimately learn to absorb and push through (even if we must tuck our heads and cry from time to time) if we really want to maintain our relationships. It's difficult...but you are obviously a super strong woman, and I'm confident you will make the right decisions regarding this hardship you now face. Nomis is correct, this is still a relatively new injury, things will get easier, they'll get harder, then they'll get easier again and there will always be something unexpected...but through it all, just try and remember to take care of yourself...and know that you don't always have to be the perfectly positive force...you are allowed times of frustration and sadness...and those times do not make you any less of a wife, friend, or caretaker.

Good luck in figuring out the next step to take in your husband's treatment and recovery. I hope the best for both of you.

With sincerest regards,
tam

[tspence]

Sadwifie,please know that our hope and prayers goes out to the both of you.I couldnt agree more with all that has been said,with much thought from myself and my wife/caregiver

[qbounce]

Here here,
Get him to a facility to be cared for 24/7 by a professional staff. Not to be pessimistic or anything, but it may be to late for the wounds to properly heal at this point. In which case, flap surgery would be in order as the last resort. The quicker the wound heals the better, so he can get strong and get living outside the bedroom.

Your wrong (as Nomis stated) regarding the timeline of his injury. He's very much still NEW to this SCI world. So, he still needs to build up his strength to it's maximum potential. Wishing you all the best, and please let us know how things go for you both.

Edited by qbounce, 20 July 2009 - 04:36 PM.

[kdenon01]

I am so so sorry to hear about everything you both have had to go through. I wish I could offer some sort of advice...but I don't have any to give. I just wanted to say that you are in my thoughts and I hope things get better!

[Yasko]

qbounce, on Jul 19 2009, 04:48 PM, said:

Here here,
Get him to a facility to be cared for 24/7 by a professional staff. Not to be pessimistic or anything, but it may be to late for the wounds to properly heal at this point. In which case, flap surgery would be in order as the last resort. The quicker the wound heals the better, so he can get strong and get living outside the bedroom.

Your wrong (as Nomis stated) regarding the timeline of his injury. He's very much still NER to this SCI world. So, he still needs to build up his strength to it's maximum potential. Wishing you all the best, and please let us know how things go for you both.

I need to emphasize how important this is!
I understand that you love him and would like to take care of him, the best you can, but his sores will need professional care!
"Please, get him to a facility to be cared for 24/7 by a professional staff."
I hope the best for both of you.

[irish]

A bit of time in a care facility may save a lot of time in the future. You can still keep an eye on him, but let the folks who know how to deal with tiis stuff do their thing

God bless and good luck

Irish

[StellaLAtella]

sadwife1, on Jul 19 2009, 12:32 AM, said:

Hi to all,
I have been reading posts from everyone. I am new to this site. I am writing to try and relieve some of my own frustrations. We are not so new to this injury. My husband was injured March of 08. I was once very strong and feeling like we could beat this SCI and he would walk again, but April of this year ended all of those hopes when he had to have his left leg amputated due to a blood clot. He had quit eating and his body was giving up. To add to our misery he developed yet another bed sore, this time it was his entire behind. He has a gapping hole that doesn't want to heal. This added with the 5 other bed sores that don't want to heal either. We've upped his protein, inserted a feeding tube and give him iron and protein supplements every day. My once strapping strong invencible husband is but a shell of what he was and he doesn't seem to understand or is able to focus on anything any more. I find myself crying all the time, I don't even know why anymore. He sits and calls my name nonstop, when I ask him what he wants he just stares blankly in space and continues to call my name. He's had CAT scans and MRI's but no evidence of any brain injury or blood clots. I don't know what to do any more. We've had 3 nursing agencies quit on us telling me he needs to be in a "skilled nursing facility because of his bed sores." I refuse to send him to be ignored and miss treated. I keep trying to tell myself that things will get better, but month after month of no good results leaves me feeling empty and out of hope.

Dear Sadwife1, do not give up hope. But the others are right in that your husband really needs the SKILLED nursing facility because they can really focus on his sores. There are many facilities who have an open door policy and you want to utilize that, too! The quicker he heals, the quicker he can be back home with you. Be strong for him & never give up hope.
~Stella

[StillFingers]

Sadwife1,

As most have said, your husband needs professional help; get him to either a hospital or a skilled nursing facility were he can get 24/7 care. Given the status of his bedsores, only 24/7 assistance, to turn him every 2 hours, clean his sores, document progress or lack of progress with healing, managing his nutritional needs and managing infection, will get you both through this horrible time.

If your husband's bedsores get infected, if he goes septic, gets a staff infection or the infection gets in his other bones/organs, you will have even more difficult issues to deal with. Our bodies might seem at times to be healing machines, but when the bodies immune system and other healing resources are stressed to far, it fails. Don't let it get that far, don't loose your husband because he/you might not be as comfortable in a controlled environment. Your home is not the place to fix your husbands problems.

Get your husband healthy, get him professional help, let the doctors and nurses work their magic. Visit him, care for him, care for yourself also. When he gets healthy, you are rested and stronger, bring him home and enjoy a healthy, happy, long life together.

BTW, late march of last year I was admitted to hospital for bedsores and other serious health issues. My body was near failing. Infection, anemia, diabetes, exhaustion and 30 years in an SCI body took their toll. After 5 months in hospital, 3 months in a skilled nursing facility and nearing 9 months healing at home, my health is much better. Infections gone, anemia/diabetes under control and my strength/stamina are getting better everyday. Out of 8 bedsores; some fist sized, only one remains and it is now only the size of a thumb nail. Very soon I will be rolling again, enjoying and sharing life more completely with my better half.

Get professional help NOW, don't wait.

My best to you and your husband,

Jerry

[tjams3]

I am so sorry you are going thru this. A skilled faciltiy is probably the best thing at this point. One thing that has helped heal my husbands sores (3) is a wound vac and sleeping on a clintron sand bed. This is a very new injury for us March 2009 and I was told my husbands wounds will not ever heal on his own. BUT 2 are on the mend:) The third one could take years to heal so he is going to go thru flap surgery this fall. Don't give up, my prayers are with you and your husband. Good Luck

[Susie_nkc]

I would have to agree with everyone else... a skilled nursing place... will help in so many ways.

[Slowlegs]

Susie_nkc, on Jul 29 2009, 07:05 PM, said:

I would have to agree with everyone else... a skilled nursing place... will help in so many ways.

Me too, professionals have all the tools to do the job properly. Sending him to a professional care facility will ensure that the pressure sores will heal as quickly as possible and it is just another tool available to you. They have all the modern equipment and the latest techniques available to them and if his sores heal it will be there. That isn't to say you haven't been doing a good job either because you have been caring for him to the best of your ability so don't start beating yourself up about it as some do. You also sound like you need some time to mentally recouperate and get yourself in order too so take the opportunities where you can get them. They don't always come around for our carers as often as they should.

PS Not sure if there is an international care for your carers day but if not there should be. And if there is it should be for a month, not just a day.

[Texas Angel Ang]

I too am sorry that you are going through such a difficult time! Ditto to what everybody else has been saying... pressure sores are not something to play around with. I have had 2 surgeries and my last surgery my doctor WOULD NOT allow me to leave the hospital until he felt satisfied that my mom could do the continued care at home.

The nurses there were fabulous and never mistreated me. You'd need your time for yourself to be strong for your husband.

Don't give up and know that this website/forum is here to support you 100%

[saradise]

Try asking he doctor for a prescription for a Clinitron bed. It is 0 pressure and you don't even have to be turned on this bed. It will greatly help get the sores healed up. Also, look into manuka honey for the sores. We just tried it and it was a miracle!!! Please PM me if you would like for me to offer some more ideas. My husband has been through a rough year with his bedsore and we are finally coming to the end and have learned so much.

[Slowlegs]

Personally, I think he needs to get into a care facility. The size and severity of the sores sound like they are big enough to be beyond a Clinitron bed or home care and may even need grafts, then there is your state of mind which sounds fragile at best at the moment.

Edited by Slowlegs, 30 July 2009 - 06:08 PM.